Stonehill Stories Episode 3

Preview

0:00 - Lauren Weeks: I have always found meaning in telling my story because at the end of the day, if you can change even just one person's life by telling your story, then it's all worth it. 

Introduction

0:13 - Liam Dacko: Hello and welcome to Stonehill Stories, the official podcast of Stonehill College. I’m your host, Liam Dacko, Class of 2016. For this episode, I have the pleasure of introducing you to Lauren (Bombardier) Weeks, Class of 2013. During our chat, the alumna and recipient of Stonehill’s Graduate of the Last Decade Award discusses what it’s like to lead with hope as a person diagnosed with cystic fibrosis.

Interview

0:41 - Liam Dacko: Why did you choose Stonehill? 

0:43 - Lauren Weeks: I actually lived pretty close by to Stonehill and so I applied, and I remember going on the campus tour and just feeling at home there a little bit. You know, it just felt like this community and seeing how happy the students were from the beautiful campus and, you know, the different programs that they had, it just felt right. And so, it ultimately became my number one school. I was so excited when I was admitted, and it was an easy decision to decide to go there. It was also only 20 minutes away. So, you know, living with cystic fibrosis, I knew that it would be helpful to go to a school that was close to home if I ever needed support medically. So, you know, that was just the icing on the cake, but I did choose to still live there. So, I had that college experience.

1:34 - Liam Dacko: Now, outside of classes, what were some of the activities you were involved in during your time here? 

1:38 - Lauren Weeks: I did a lot of volunteering in sort of service-focused groups. So, you know, I went on a H.O.P.E. trip each year that I was there, and I was a H.O.P.E. leader. Every semester I was involved in some sort of volunteering. And then, our senior year, I started a special interest house with my two best friends, and it was called Students for Service. And so, it was a group of women. We all lived together, and we were focused on community service. So, we did different projects as a team. We had a goal of, you know, how many hours of service we wanted to do each semester. Stonehill is just like such a great community that is focused on giving back. And so, a lot of what I focused on when I was there was that service aspect. You know, growing up, I had been the recipient of a lot of help and service because I had cystic fibrosis. And so, I really felt like it was important to give back and be that person for other people. You know, I think the value of human connection is so important. And so, I felt called to continue that and give back in a way. 

2:47 - Liam Dacko: Now, you mentioned a way that cystic fibrosis impacted your college experience positively by propelling you to serve others, but what were some of the challenges that you faced while you were here? 

3:00 - Lauren Weeks: So, I guess I'll start with an overview of what CF is. So, cystic fibrosis is a hereditary disease. It's genetic. Basically, what happens is it causes an imbalance in your sodium chloride transport. And what happens is you have this buildup of mucus in all kinds of areas in your body. So, a healthy body kind of has this lubrication on all of your different organs that help keep it hydrated. In CF, because there's an imbalance there, it causes this buildup of mucus. The most prominent area that it affects is your lungs. So having that buildup of mucus causes a chronic cough. And it's because you have that mucus, it can cause lung infections. And that's ultimately the biggest culprit in managing the disease. And then it would also affect my digestive tract as well. So, I had to take digestive enzymes every time I ate, and I was really malnourished. So, I was really small, my growth was stunted, it was hard to gain weight. And as a result of all of that kind of… the infection, the lack of nutrition, I was just really tired every day. So, rest was really important. My body was always just fighting things. And that was very fatiguing.

4:16 - Lauren Weeks: As far as the management of my symptoms, I had to take a variety of different medications. And the treatments that I had to do every day was about an hour where I had this vest, it was called a therapy vest that you would wear, and it would shake your lungs, really, so that I wasn't coughing so much, so that I could breathe more easily.  And then I had nebulizers as well, which were just inhaled medications. As far as how it affected me in college, it was really a couple things. One is I had to really come up with a plan for how I was going to manage my own health independently. I went from living with my parents to really living alone and managing my health on my own.

5:04 - Lauren Weeks: So, I had to learn how to do all of that without my parents reminding me. They did a good job of really preparing me and teaching me to be independent before I went to college. So, by the time I got there, I was comfortable managing my own medications and when they needed to be taken and filling my pill containers and ordering prescriptions, kind of doing all of those things. I had to shift from my parents to me. And then I also had to figure out how I was going to live and what that looked like as far as the dorm room. So, a lot of people with CF would get a single room because they had treatments they had to do, and some people were very private. You also had to be careful about getting colds and kinds of germs. So, living alone sort of protected you, in a way, from not being around other people who may be getting sick. And it allowed you some time to get rest. You can sort of do that on your own schedule. 

6:05 - Lauren Weeks: I was really hesitant to want to live alone because I was a really social person. And I liked being around people. So, I was really lucky that I met my roommate just in a Facebook group before we went into college. And we knew each other. We knew we were both going to Stonehill. She learned more about my CF and how I manage my health. And she agreed to live with me. Despite the fact that I'd be doing my treatments in the morning and needing rest and everything, she was just so understanding. So, balancing those conversations was also a way it impacted me. And I chose to be really open with my diagnosis and with sharing with people that I had to do these treatments, that I needed to take these pills, and kind of just educating my friends and the people who lived on my floor about what CF was. And I got to a point where I would be doing my treatments with the door open, and my friends would come in and hang out with me while I was inhaling my nebulizers or whatever it was. I was really thankful that I decided to be so open up front because it allowed me to manage my condition and not really be trying to hide it. Thankfully, I had friends who were really supportive. And I also relied quite a bit on the Department for Disability Services, where they could help me advocate for different services that I might need.

7:32 - Liam Dacko: I'm wondering what advice do you have for young people who might be living with a chronic illness while they're currently pursuing a degree at a college like Stonehill? 

7:42 - Lauren Weeks: You're not going to be successful in college if you're not able to keep yourself healthy. Because CF was so demanding on my body, I knew that I needed to prioritize rest as much as possible. Going into college with the intention of, even if it means making sacrifices, you do need to prioritize your health. The other thing I would say is some people can be really private and maybe they don't want people to know what they're dealing with, which is fine. It's their own prerogative. But as I talked about, it makes it really hard to take care of yourself if you're not open. My recommendation is to really just be open to the degree that you're comfortable with, even if it's just a trusted few people who you share your experiences with. 

8:27 - Liam Dacko: Now, on the topic of being open about your illness, back in 2018, you wrote a book inspired by your own journey with CF. Can you tell me a bit more about that? 

8:37 - Lauren Weeks: I wrote a book called Growing Up Sick: How to Turn Your Kid's Scary Diagnosis into a High-Quality Life. The inspiration behind that is I was finding…at the time, I wrote a blog. It was called I Have CF, So What? Later, rebranded to The So What Life. It was really just about my life with CF. It was meant to be more positive and more inspirational, I guess, about really how to overcome adversity and to take something that was supposed to put limits on my life and actually use it as fuel to just live a life despite the hardships. I was doing everything to get as much out of life and experience as much of life as possible. My blog was just an opportunity to share how I was doing that and maybe to inspire other people with CF or parents of kids with CF that they didn't need to let CF hold them back.

9:43 - Lauren Weeks: As part of writing that blog, I would have parents of kids who were just diagnosed with CF reach out to me and just say, like, thank you for sharing your story because it's been really helpful and hopeful seeing that you are growing up and you're an adult and you're managing your CF okay and you're healthy and you're happy. And so, I was having a lot of those conversations. So, I wanted to write a book about the way my parents raised me and about what it was like growing up with CF and kind of how I got to a point where I was able to have a positive attitude rather than one that was viewing the world through brown glasses rather than rose colored glasses and what led me to that. My book was really centered around kind of those themes and how my parents didn't put me in a bubble and allowed me to experience life and taught me the importance of hope. 

10:40 - Liam Dacko: Now in recognition of your advocacy on behalf of people with chronic illnesses, you received the 2021 Graduate of the Last Decade Award from Stonehill College. What was it like for you to receive that honor? 

10:52 - Lauren Weeks: I was truly flattered and honored that people thought of me to receive the award. And when I went to the ceremony, it was a celebration of how far I had come from when I was a student at Stonehill to now. And I think it showed the importance of telling your story.  And I think as a writer, I have always found meaning in telling my story because at the end of the day, if you can change even just one person's life by telling your story, you know, then it's all worth it. You know, maybe someone hears my story and decides they want to go into science to develop cures for diseases like mine or someone, you know, hears the story and decides to donate to an organization impacting patients or just impacting people, right? Or maybe someone takes even just a nugget of information from my story and feels a little bit more hope or feels like miracles are possible or they can believe in miracles or, you know, maybe just hearing my story gives them an appreciation for life and realizing that the little daily annoyances don't really matter. We're just lucky to be alive, right? So, you know, to receive this award, it just kind of shows that it's been worth it to share that story and to see how much has changed since I wrote my book and since I started sharing my story on my blog online. 

12:22 - Lauren Weeks: The CF that I had in college where I was doing treatments every day and taking medication and having to go into the hospital, so much changed between then and now. Around 2019, the company Vertex Pharmaceuticals, they developed a life-changing treatment for CF. The drug Trikafta in 2019 was really just a game changer for me personally with CF. It completely, completely changed my health. The only thing I do to manage my CF today is take Trikafta in the morning and at night. And truly, like, it was life changing. And it wouldn't have been possible without this company, first of all, investing in doing the research and, you know, the money required to find a treatment for CF, but also, you know, because of foundations like the CF Foundation that did so much fundraising so that they could invest in Vertex. It fills me with a lot of gratitude and thankfulness, really. 

13:26 - Liam Dacko: Well, Lauren, before we wrap up this conversation, I just want to say thank you so much for coming onto the podcast and sharing your story with us. I think listeners, whether they live with a condition like CF or not, they're going to take away something from what you've had to say. 

13:42 - Lauren Weeks: Yeah, thank you so much. It was great to be here and thanks for having me.

Credits

13:51 - Liam Dacko: Thank you for listening to Stonehill Stories! This podcast is produced by Jill Goddard and Liam Dacko of Stonehill College’s Office of Communications and Media Relations. Intro theme composed by Associate Professor of Music James Bohn. Outro theme composed by Philip Pereira. Graphic design assistance provided by Colin Spencer. To discover more about Stonehill College, visit our website at Stonehill.edu.